Recently Diagnosed PMR Disease Progression

In July 2024, I was diagnosed with PMR and suspected GCA. My PCP contacted a rheumatologist in another state (I live in a rural area) the day I got my bloodwork results. He immediately prescribed 60 mg. of Prednisone to start that day. I was not able to get the temporal biopsy for another 8 days. Although it came back negative, the report stated that that didn't indicate that I didn't have GCA. Out of an abundance of caution, I remained on the 60 mg. for 6 weeks, then began my taper.

Go to the ER. Don’t wait to see a doctor and mention it. I lost my sight because I did not go to the ER right away. You have GCA which is terribly serious

You should not be in significant pain like this. Your prednisone dose is almost certainly too low.

In my case, I was initially put on 10 mg/day, then 20 mg/day a few days later, then 60 mg/day a few weeks later, this time by emergency room doctors due to double vision and continued pain. The prednisone dose must be adequate to take away most of the pain, or you will experience inflammation that can be very dangerous, including blindness if it turns out to be giant cell arteritis. Further, the long term prognosis and chance relapse turn out to be better for those that are initial on fairly high doses of prednisone.

In my case, after about a month of 60 mg/day of prednisone, I was prescribed weekly injections of Actemra (tocilizumab), and I began tapering off prednisone over 6 months. Prednisone has long term side effects you don't want, so it is good to get off, but not before the inflammation has been taken care of. Actemra turned out to be very effective for me with almost no side effects.

Teri sorry it took so long to get back to you I went to the ER Wednesday evening and was admitted . I still can’t get the Ultra Sound done until July 1st but they done a CT scan and MRI and said I don’t have GCA but want me to still have ultra sound. My temple swelled again and headache and eye/ear pain got worse. I also have a 3 cm Choradial Fissure brain cyst on the left side which I’ve had for 30+ years that they thought could be pushing on the right side but they ruled that out. They were going to release me unless I still had the headache which I do so they kept me . I’ve also got nerves pinched in my neck and laying here my temple swells but setting up headache gets worse. I was typing someone and leaned my head to the side and I felt the temporal pain . So who knows what I have

I hope you find out what's going on, @sbthe plumber1, and that you get some relief soon.